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Inoperable Sarcoma in chest wall.

michelle86
Posts: 2
Joined: Apr 2011

Hello,

I am 25, I was diagnosed with a large synovial sarcoma in the pleura of my right lung in December. I had to give birth to my first child the next day so I could start treatment. Unfortunately due to a past operation on my lung the cancer is inoperable and due to the size of the tumour it's unlikely chemotherapy would get rid of it. After four of six cycles of chemo it is about 50% smaller but still around 15cm in length. I do not know what is next whether it'll be more chemo, radiotherapy or just a case of no more treatment and hoping it'll stay in remission for a while.

I have never heard of anyone having an inoperable synovial sarcoma before, most people have an operation or amputation. Can anyone relate to this? I am wondering about what will happen after chemo, if it is likely to stay smaller for a while or if it will just start aggressively growing again.

Also can anyone tell me if they had radiotherapy on a synovial sarcoma tumour and how effective it was? I know most people have radiotherapy post op but has anyone had it pre op?

Thank you for your time. Any information will be greatly appreciated.

Michelle

TraumaMamma's picture
TraumaMamma
Posts: 19
Joined: Apr 2010

I'm going to see my doctor too, waiting on the unknown. I'll have to have surgery and get whatever this is out.

As my knee came back perfect last year (and I had a "bakers cyst" for no reason and had one again this year with no cartilage tears either), but I have my new little friend on my MRI, which I am assuming had made the problem last year and has made my problem worse this year. (and the pain is much worse and different this year.

I can tell you that as a paramedic, and RN student, with 28 yrs of medical experience sometimes things are percieved as inoperable as they seem to be tangled up around other important things or cannot be removed, or shrunk, etc.

What I CAN tell you, sweetheart is, don't take their answer as the "be all end all" to anything. Medicine is always changing. I have had to "unlearn" so many things as a paramedic and relearn knew things and it is always for the better of the patient.

In the meantime, learn as much about your diseas as you can. Eat as healthy as you can, and if I can offer ONE bit of advice, it is this. Attitude is everything in life. Whether people have a diagnosis such as you or not.

Believe and be good to yourself. Stay strong and never give up searching. It's a learning process for us all.

xoxox Donna

obie1203
Posts: 8
Joined: Mar 2011

hi michelle, my 17 year old son also was diagnosed in march of a primary synovial sarcoma in the r. lung after the vats procedure for a collapsed lung. they found a less than 1 cm lesion. is yours primary or secondary? i have been to sloan in NY and Mt. Sinai. It is very rare as a primary finding in the lung and not much info out there. ours is a wa
iting game with scans every three months. I am also researching holistic alternatives. I was recommended to a Dr. Gonzales in NY (who treats with enzymes, diet, etc), along with some others, etc. I wish I had more to offer you. I wish you the best, hang in there

ksfolmar
Posts: 6
Joined: Feb 2011

Michelle,
I had tumor in the lung and pleura. The last surgery I had, the entire pleura was removed. You can look into proton therapy at MD Anderson. I will be starting this treatment in a few weeks. It is very targeted and will not damage the surrounding lung tissue. Good luck and God bless! Kim

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